Recent News & Events

NHS England and the Scottish Medicines Consortium agree to reimburse Ravicti® (glycerol phenylbutyrate) for the management of Urea Cycle Disorders (UCDs) Ravicti is the first liquid formulation of phenylbutyrate, which is virtually tasteless and odourless. This treatment, a more palatable alternative to sodium phenylbutyrate will be provided via specialised metabolic commissioning centres across […]

Metabolic Support UK, as the umbrella patient organisation for Inherited Metabolic Disorders, is disappointed that NICE does not recommend re-imbursement of the treatment burosumab for X-linked Hypophosphatemia (XLH) in children and young people following the recent Highly Specialised Technologies evaluation. Burosumab is the first and only treatment to target the […]

Following the recent evaluation meeting, the National Institute for Health and Care Excellence (NICE) has issued draft guidelines rejecting NHS funding for the drug burosumab for children and young people with X-linked Hypophosphataemia (XLH), after concluding that the most likely cost-effectiveness estimates are much higher than would normally be considered […]

Over 150 patients, families and professionals attended the latest Climb Annual Conference which took place on Saturday 14th October 2017 in Birmingham. Our conferences are a way for us to engage key professionals and partners to share with us the latest developments in the world of Inherited Metabolic Disorders, as well […]

We are pleased to confirm the itinerary for the Climb Annual Conference on 14th October 2017 at the Macdonald Burlington Hotel in Birmingham. It’s going to be an informative day with plenty of opportunities to meet and get to know other families, hear from a range of speakers and help […]

A huge thank you to our 7 Team Climb cyclists Marc Wittenberg, Kevin Hancox, Kate Jenkins, Emily Cullum, Jade Devonshire, Andy Law and Jaq Pearce who took part in the RideLondon 46/100 event on 30th July 2017. Not only did they take on this fantastic challenge for Climb, but together […]

After hearing the latest news on this case, Charlie and his parents are in the thoughts of everyone at Climb. Our thoughts also go out to all those involved in the care of Charlie. Climb exists to raise awareness of Inherited Metabolic Diseases including Mitochondrial Disease. It is important that […]

M&Co in Nantwich held a fantastic fashion show in aid of Climb on Wednesday 5th July, which was attended by over 50 people including the Mayor of Crewe, Cllr Diane Yates. Models, including staff, customers and their families and friends from the local community (and our very own founder, Lesley […]

July 2017 – After a 2 year process Climb is pleased that NICE has published draft guidance recommending the drug Strensiq (also known asfotase alfa) for people with paediatric-onset hypophosphatasia. The funding agreement between NHS England and Alexion Pharma is based on a 5-year Managed Access Agreement which means that […]

100 patients, families and professionals came together on Saturday 1st July to discuss the latest developments in X-Linked Hypophosphatemia at a special event hosted by Climb in collaboration with Central Manchester Healthcare Trust. XLH – X-Linked Hypophosphatemia – is a genetic disorder that affects about one in 20,000 people. Typically, […]

On Thursday 11th May 2017, we were honoured to attend the Mayor Making Ceremony at South Cheshire College to watch Councillor Diane Yates receive the Chains of Office and Civic Insignia, becoming the fifth Mayor of Crewe. With an interest in supporting homegrown charities, and improving the lives of children, […]

The Department of Health and NHS England recently made a commitment to develop an implementation plan for the UK Strategy for Rare Diseases in England, which is a really positive outcome for those affected by Inherited Metabolic Disorders. With the General Election taking place on 8th June, we want to make sure […]

Our exceptional runners have kindly shared their individual stories of why they took part in this extraordinary event for Climb. We would like to thank Team Climb for all of their massive fundraising efforts, hard work and enthusiasm! Jessica’s Story “I ran the 2016 London Marathon for Climb and absolutely loved the […]

The Minister of State for Health, Philip Dunne MP, has announced that NHS England will develop an implementation plan by the end of the year for the commitments outlined in the UK Strategy for Rare Diseases. For those affected by Inherited Metabolic Disorders in England this is a fantastic result and […]

The glitz and glamour of Las Vegas came to Crewe Hall Cheshire in Cheshire on Saturday 25th February 2017, for the inaugural fundraising charity ball of the Rotary Club of Bentley Cheshire in aid of Climb and Young Minds. The evening began with a drinks reception, the bubbles and laughter flowed! Everyone really […]

Climb has appealed the NICE Review Committee decision not to approve the treatment of severely affected juvenile and adult patients with the treatment asfotase alpha. Whilst Climb is extremely pleased that the treatment will be available for all perinatal and infantile cases of the disorder under the Managed Access […]

John MacDonald has undertaken some amazing challenges for Climb this year! On 3rd September, John tackled the Man vs Mountain event: a 22 mile race from Caernarfon Castle to the summit of Snowdon with a series of punishing obstacles in Dinorwic Quarry thrown in for a cool down! In preparation […]

Over 100 people attended the latest Climb conference; Transition and Adult Care, which took place on Saturday 8th October 2016 at The Studio, Birmingham. We understand that the transition from paediatric to adult care is a worrying time for patients and their families, so we developed a full programme to open […]

NICE has published draft guidance recommending the drug asfotase alfa for children with perinatal- and infantile-onset hypophosphatasia (HPP) – a very rare inherited condition affecting between one and seven babies each year in England. The full draft guidance can be accessed here. In summary: Asfotase alfa is recommended as an option […]

We are delighted to announce the Las Vegas Charity Ball, at Crewe Hall Cheshire on Saturday 25th February 2017! This exciting charity ball is being organised and hosted by the Rotary Club of Bentley Cheshire; a Satellite club of Crewe & Nantwich Weaver Rotary, which was inaugurated in July 2016. The […]

Over 50 people attended a charity fashion show at M&Co on High Street Nantwich on Thursday 15th September, which raised more than £400 for Climb. Models, including staff, customers and their families and friends from the local community, took a turn on the catwalk, showcasing the latest seasonal fashions from […]

Saturday night favourite the X Factor hit our screens at the weekend, and one singer hoping for the much coveted ‘four yeses’ was Rebekah Ryan from Tamworth who tragically lost her son when he was just three years old. Rebekah opened up to the judges about the heartbreaking loss of her first son Ethan, who […]

Have you been inspired by the Olympics and fancy taking on an amazing challenge? Applications are now open for Golden Bond places for two fantastic events in 2017! Virgin Money London Marathon – 23rd April 2017 Think 26.2 miles of iconic London landmarks, cheering crowds, an electric atmosphere, team camaraderie, […]

MCADD families belong to what is now, by far, our largest group of families. Since the addition of MCADD to the screening programme in 2010, the number of MCADD families has increased and over time so has the need for a more varied spectrum of support. In order to ensure […]

To celebrate Metabolic Disease Awareness Week, supporters of Climb took over social media, with over 360 #metabolicselfies shared! It is estimated that each person has between 200 and 300 followers on Facebook. So, with 360 selfies shared, and an average of 250 followers each, around 90,000 people will have learnt a […]

RareConnect is a safe, easy to use platform where rare disease patients, families and patient organisations can develop online communities and conversations across continents and languages. RareConnect partners with the world’s leading rare disease patient groups to enable families and patients to join discussions, share stories and knowledge, ask questions, […]

Climb would like to say a massive thank you to all those families and professionals who joined us on the 4th June for our first Urea Cycle Disorder event. We had over 50 people join us for a really interesting day which saw the launch of the RareConnect network, […]

Last month saw the 1st birthday of BreathDX a UK company driving the design and development a system to measure ammonia levels in IEM patients from their breath rather than blood. Thanks to the help from the CLIMB community BreathDX now have over £1m from UK funding bodies to develop […]